MINNEAPOLIS--(BUSINESS WIRE)--Bill Nye, who has helped make science a part of pop culture for a generation of adults and children, is now using his acclaimed platform to educate people about Ataxia, a rare neurological disease that affects a person’s ability to walk, talk, and use fine motor skills. Known in households throughout the United States as the “Science Guy,” Bill Nye will now make his unique style and perspective the centerpiece of the largest Ataxia awareness campaign to date, teaming up with the National Ataxia Foundation (NAF).
Genuine and familiar voice for the Ataxia community
The Ataxia awareness campaign and International Ataxia Awareness Day (IAAD), which is recognized on September 25th of each year, holds personal meaning for Bill Nye. Bill’s family has Spinocerebellar Ataxia (SCA) type 27B, a form of Ataxia that leads to loss of coordination and muscle control.
“Bill Nye Ataxia Advocate”
To raise awareness of the significant daily struggles of people who live with Ataxia, as well as challenges faced by their families and caregivers, and underscore the need for new treatment options, Bill Nye is using his trademark style for making science interesting and understandable for large audiences. He has created a series of four short videos educating people about Ataxia and sharing his personal connection to the disease. The videos are posted on Bill Nye’s social media platforms to his 23 million followers. People can also sign up to be a “Bill Nye Ataxia Advocate” on the NAF website to stay up-to-date on the latest advocacy initiatives and progress in treatments.
SCA is a group of dominantly inherited disorders characterized by progressive Ataxia affecting coordination of hands, arms and legs as well as balance and speech. Hereditary Ataxias are passed on from parents to their children, oftentimes affecting many generations of the same family. People with SCA experience significant morbidity, including progression to a wheelchair, impaired gait leading to falls, inability to communicate due to speech impairment, difficulty swallowing, and premature death. Signs and symptoms can appear anytime from childhood to late adulthood and progress over a number of years. The range of symptoms and rate of progression of disease depend on the type of SCA, age of onset, and other genetic factors. Currently, there are no FDA-approved treatments and there is no cure for SCA.
“For people living with Ataxia, the common aspects of daily life are a continuous challenge,” said Andrew Rosen, Chief Executive Officer of NAF. “To build greater understanding and empathy of the debilitating burden of Ataxia, it takes the collective voices of many across the scientific, medical, and advocacy communities. We are grateful to Bill Nye for lending his familiar and trusted voice to shed light on Ataxia and spur continued progress on new treatments and an eventual cure.”
For more information about Ataxia, please visit www.ataxia.org.
About National Ataxia Foundation
Ataxia is a rare neurological disease affecting tens of thousands of people in the U.S. and many thousands more around the world. It is progressive, affecting a person’s ability to walk, talk, and use fine motor skills. The National Ataxia Foundation (NAF) was established in 1957 to help persons with Ataxia and their families. Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. NAF’s vision of a world without Ataxia will be accomplished through our primary programs of funding Ataxia research, providing vital programs and services for Ataxia families, and partnering with pharmaceutical companies in the search for treatments and a cure. We work closely with the world’s leading Ataxia researchers and clinicians, promoting exchanges of ideas and innovation in Ataxia discovery.
About Bill Nye
Bill Nye is an American science educator, engineer, comedian, television presenter, inventor, keynote speaker and New York Times bestselling author. In his role as the creator and host of the Emmy Award-winning beloved 90’s television series Bill Nye the Science Guy, Nye helped introduce viewers to science and engineering in an entertaining and accessible manner, fostering an understanding and appreciation for the science that makes our world work. He is the executive producer and host of the science series The End is Nye, which is available to stream on Peacock. Today, Nye is a respected champion of scientific literacy who has challenged opponents of evidence-based education and policy on climate change, evolution and critical thinking. He currently serves as CEO of The Planetary Society, the world’s largest and most influential non-governmental space organization, co-founded by Carl Sagan.
